Your Stroke Journey - Heart and Stroke Foundation of Canada

Transcription

Your Stroke Journey
A guide for people living with stroke
Acknowledgements
Sincere thanks to the many people who helped create this resource:
To those living with stroke — your willingness and openness to share
your personal journey has given this guide a foundation in real life.
To their care partners — your experiences and support have added
incredible value.
To the healthcare providers and experts — your expertise, insight and
caring have helped provide the most current, accurate information.
It really takes a village to create a resource. Thank you for your time,
energy, and talent.
Do you want us to keep you up to date on new stroke information,
and do you want to provide input into our work? Sign up at
heartandstroke.ca/connect
We will stay in touch with research news, tips and strategies to help
you manage your recovery, educational webinars and requests for
your opinion.
Survivor to survivor:
WORDS OF HOPE AND ADVICE
You can’t compare your stroke to
someone else’s. – Lindsay
The stroke is with me every day and affects
everything I do. Life has become a series of
adjustments to make daily life work for me.
I have grown as a person and fully appreciate
the simple things in life. I now live my life
more for today and enjoy and appreciate the
many things I once took for granted. – Lou
Be positive,
attitude is
everything.
– Dawn
You are
more than your
stroke. – Carol
YOUR STROKE JOURNEY | A Guide for People Living with Stroke
1
Survivor to survivor:
WORDS OF HOPE AND ADVICE
You are always trying to balance hopeful
and realistic, realizing there is no magic.
– Luis
Do something! If I do nothing, contribute
nothing, at what point do I become nothing?
Do something, anything to keep going.
– John
Stroke leaves you feeling vulnerable
for sure. You have to believe you have
a strength you never knew existed. Let
that strength surface and you will be
able to overcome even some of the
toughest obstacles. – Patrice
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HEART AND STROKE FOUNDATION
How
to use
this guide
This guide is written for adults who have had a stroke. We also hope that
your care partners, family and friends find it helpful.
We have designed this guide to:
• help you understand stroke and its effects
• give you tips and strategies for living your life fully
• help you know that you are not alone in your recovery
• tell you about the support services, healthcare providers and
networks of stroke survivors that can help you on your journey.
You may want to read this guide from cover to cover, or you may just seek
out certain topics. Take from it information that is important to you. Apply it
to your recovery plan. Share it with family, friends and your healthcare team.
We use the term care partners to describe those in your life (family and
friends) who support you most in your recovery.
Stroke can happen at any age. If your child has
had a stroke, you may find A Family Guide to
Pediatric Stroke helpful.
When you and the people around you better
understand the journey you are on, you can move
through it with more confidence and support.
If you need information
on pediatric stroke,
read “A Family Guide
to Pediatric Stroke”
available at
strokebestpractices.ca
Your journey
Stroke is a major life event for you and those close to you. The common goal
for everyone — you, your care partner, your family, your friends and your
healthcare team — is your recovery.
Recovery means regaining as much function and independence as possible.
This may mean a life different than the one you had before stroke. Part of
the recovery process is building a life with your current abilities that includes
things that you find meaningful and fulfilling.
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How
to use
this guide – continued
Recovery can take a lot of work and has its ups and downs. Reaching out for
support can help.
There are three things that you can do to make your journey easier:
1. Be informed
Know the facts. Be aware of best practices for care and how you can be
involved in your care and recovery.
2. Be part of the process
Make your voice heard when it comes to setting goals and care planning.
Ask questions and get answers.
3. Do what needs to be done to get better
Practice your exercises. Take your medication. Make lifestyle changes.
Achieve your goals.
Roles and relationships
Each family has its own routines, and each member has their own roles and
responsibilities. A stroke can change your natural family balance. Family
roles may change. The same can be true of your relationships with close
friends. Part of the recovery journey is to work out a new balance.
My family’s support was key. When
my downs were deep, they lent me
a hand to get up again. – Luis
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There are three things that you and each person close to you can do to help
with your recovery:
1. Communicate
Talk positively, clearly and practically. Listen carefully. Always consider how
the other person is feeling.
2. Support each other
Know what type of support you want and ask for it. Is it practical help?
Is it encouragement? Is it helping figure out new ways to do things?
3. Reach out
It is a big help if there is a broader support network of friends outside of
your family and your care partner. Sometimes, just knowing they are there
— even if you do not need to turn to them — can be helpful.
Keep people who are positive
around you – it will make a
difference.
– Wayne
Asking for help is NOT a sign of
weakness. – Carol
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A message for care partners:
Look after your own physical
and emotional health
Stroke recovery can take a toll on everyone. Care partners are
particularly vulnerable. You may tend not to take a break or look
after your own health. Juggling roles and providing daily support
can be taxing and tiring for even the most devoted person, no
matter how happy you are to take on this role.
To prevent burnout, it helps to eat well, stay active, get a good night’s
sleep and take time for an enjoyable activity.
Care partners and family members should watch themselves and one
another for signs of burnout. Look for ways to reduce your load and
take a break. Reach out for support to family, friends, support groups
or programs and the healthcare team if you see signs like these:
• feeling unusually tense or edgy
• being angry with the stroke survivor or others
• feeling sad, tearful or dissatisfied with life in general
• feeling very tired and saying things like, “It is too much”
• no longer seeing friends
• losing interest or energy for activities you enjoy
• getting sick more often and taking an unusually long time to
recover (lowered immunity)
• showing an increased need for drugs or using alcohol too much
• feeling out of control, with no sense of how to regain that control
• having trouble sleeping or having disturbing dreams
• not eating well.
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Contents
Survivor to survivor: Words of hope and advice....................................... 1
How to use this guide........................................................................................... 3
1
Understanding stroke........................................................................................... 9
The brain.......................................................................................................... 10
What happens during a stroke................................................................13
How can a stroke affect my body?........................................................15
2
Stroke care...............................................................................................................17
Your stroke recovery team........................................................................18
The first days..................................................................................................21
Being discharged – Preparing to move to another
step in your recovery..................................................................................25
The first weeks..............................................................................................28
3
Preventing another stroke.................................................................................31
Know the signs of stroke...........................................................................32
Know your risk factors...............................................................................33
Make healthy choices.................................................................................35
Make a plan for healthy changes.......................................................... 42
Work with your healthcare team.......................................................... 45
4
Living with physical changes..........................................................................47
Communication........................................................................................... 48
Challenges with arm and legs..................................................................51
Swallowing problems (dysphagia)....................................................... 54
Bladder and bowel problems..................................................................56
7
5
Living with changes to emotions, energy, cognition,
and perception......................................................................................................59
Emotional changes..................................................................................... 60
Low energy (fatigue)..................................................................................63
Cognitive problems (thinking)................................................................65
Changes in perception.............................................................................. 68
6
Relationships...........................................................................................................71
Connecting with family and friends......................................................72
Sex and intimacy..........................................................................................74
7
Everyday tasks: Your new normal.................................................................77
Bathing, grooming and dressing........................................................... 80
Preparing meals, eating and drinking..................................................82
Driving..............................................................................................................85
Household chores....................................................................................... 86
8
Getting the most from leisure time...............................................................91
Adapting your activities — some examples.......................................92
9
Returning to work................................................................................................95
Looking at your abilities........................................................................... 96
Volunteering.................................................................................................. 99
10
Taking care of business: Advance planning.............................................101
Your sources of income...........................................................................102
Savings on your taxes..............................................................................104
Covering your medical expenses.........................................................105
Advance planning......................................................................................106
Was this guide helpful?..................................................................................... 111
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1
Understanding STROKE
Louise and John
YOUR STROKE JOURNEY | 1. Understanding Stroke
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1.
Understanding STROKE
The brain is the control centre of your body. It controls how you think, feel,
communicate and move. Knowing how your brain works can help you
understand your stroke.
The brain
Brain cells
The brain is full of specialized cells called neurons. These neurons make the
brain work. To work properly — and even to survive — they need to be fed
by a constant supply of blood.
Blood vessels of the brain
Arteries and veins are types of blood
vessels in your body. Arteries carry blood,
rich in oxygen and nutrients, to your organs.
Veins carry waste products away from your
organs. Cerebral arteries are the arteries of
the brain. Normal brain function needs a
constant supply of oxygen and nutrients.
When a stroke happens, the blood flow is
disrupted. Some brain cells do not get the
© Heart and Stroke Foundation of Canada
oxygen and nutrients they need. When the
cells die, that area of the brain cannot function as it did before.
Hemispheres
The brain is divided into two parts called hemispheres, the right and the left.
The right hemisphere of your brain controls the left side of your body. The
left hemisphere of your brain controls the right side of your body. Some
functions are controlled by both.
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Functions of the two hemispheres of the brain
Left Hemisphere
Spoken
Language
Right Hand
Right Hemisphere
Left Hand
Music
Spatial
Orientation
Number
Skills
Scientific
Functions
Artistic
Functions
100
100 mL
80
60
40
20
Art
Awareness
Written
Language
Reasoning
ity
Creativ
Insight
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Regions of the brain and what they control
Each hemisphere is divided into six regions or lobes that control different
functions. This chart shows the names of the lobes and their functions:
Frontal
Parietal
•
•
•
•
• Sensations: pain, touch,
temperature
• Understanding and interpreting
sensory information, such as
size, colour and shape
• Understanding space and
distance
• Math calculations
•
•
•
•
Personality
Emotions and arousal
Intelligence
Ability to concentrate,
make decisions, plan, put
things in order, solve problems
Awareness of what is
around you Voluntary movement
Ability to speak and write
Behaviour control
Occipital
• Vision
• Interpreting
what you see
Temporal
• Ability to understand
language
• Hearing
• Memory, long-term
storage of memories
• Organization and
planning
• Behaviour and
emotions
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Brain stem
• Breathing
• Heart rate control
• Consciousness, alertness,
wakefulness
• Swallowing
• Blood pressure
• Sweating
Cerebellum
• Balance
• Motor (movement)
coordination
• Posture
• Fine motor skills
What happens during a stroke
A stroke happens when blood stops flowing to any part of your brain. This
interruption causes damage to the brain cells which cannot be repaired or
replaced. The effects of your stroke depend on the part of the brain that was
damaged and the amount of damage done.
Types of stroke
Ischemic stroke
Most strokes are caused by a blockage or clot in a blood vessel in your brain.
This is called ischemic stroke.
The blockage can be caused when a substance called plaque builds up on
the inside wall of an artery. The blockage or clot grows as blood cells and
fat cells stick to the plaque. Gradually, it grows big enough to block normal
blood flow.
Ischemic Stroke
Blood clot stops the
flow of blood to an
area of the brain
The blockage or clot can form in an artery in your brain. Or, it can form in an
artery in another part of your body and travel to the brain.
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Transient ischemic attack (TIA)
A transient ischemic attack (TIA) is caused by a small clot that briefly blocks
an artery. It is sometimes called a mini-stroke or warning stroke. TIA symptoms
might last only a few minutes or hours. No lasting damage occurs, but TIAs
are an important warning that a more serious stroke may occur soon. They
are a medical emergency — call 9-1-1.
A transient ischemic attack (TIA) is sometimes
called a mini-stroke or warning stroke. TIAs are
a warning that a more serious stroke may occur
soon. TIAs are a medical emergency — call 9-1-1.
Hemorrhagic stroke
Hemorrhagic stroke is caused when an artery in the brain breaks open.
The interrupted blood flow causes damage to your brain.
Hemorrhagic Stroke
Weakened/diseased
blood vessels rupture
Blood leaks into brain
tissue
High blood pressure makes arteries weak over time. It is a major cause of
hemorrhagic stroke. Weak spots in the arteries called aneurysms can stretch
too far and eventually burst.
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Other causes
In rare cases, a tumour, an infection, or brain swelling due to an injury or
illness can cause a stroke. Some people have irregularities in their arteries
at birth that can cause a stroke later in life.
How can a stroke affect my body?
The effects of stroke are different for each person. They can be mild, moderate
or severe. The severity depends on factors such as:
• the type of stroke (ischemic or hemorrhagic)
• the side of the brain where the stroke occurred (right or left
hemisphere)
• the lobes of the brain affected by the stroke
• the size of the damaged area in the brain
• the body functions controlled by the affected area
• the amount of time the brain area had no blood flow
• the time it took to get to hospital.
TIA >>>>>>>>> Mild Stroke >>>>>>>>>>> Moderate Stroke >>>>>>>>>>>>> Severe Stroke
0 1 2 3 4 56 7 8910
No Permanent Damage >>>>>>>>> Some Damage >>>>>> Significant Permanent Damage
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Help us make this guide better!
There is a brief survey at that back of this book. Please fill
it out once you have read it. You can also fill it out online at
heartandstroke.ca/feedback
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2
Stroke CARE
YOUR STROKE JOURNEY | 2. Stroke Care
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2.
Stroke CARE
Your stroke recovery team
When you have a stroke, a team of healthcare providers works with you and
your family, whether in hospital or at home, to:
• help you recover from or adapt to the changes caused by stroke
• teach you about stroke, its effects and strategies to use in daily life.
Get to know each team member and their role in supporting you in your
recovery. Keep a list of names, roles and ways to contact them.
Your role working with the team
You, your care partner and those close to you are at the centre of your
stroke recovery team. Teams usually meet regularly. Ask when they will be
meeting to discuss your care. Make sure you are included. If you are not up
to it, have your care partner or a family member attend on your behalf.
Overcoming
language barriers
Translation services
are available in most
medical centres in
Canada. If needed,
ask what is available
to you.
YOU ARE THE CAPTAIN OF YOUR OWN SHIP.
The many doctors, nurses, social workers,
navigators and therapists are there to give
advice and support but it is up to you to
decide where you are sailing. If your way is
blocked, try a new direction. – John
What to tell the team
Help the team get to know you by sharing information about:
• Your background: What kind of work you do and your hobbies.
• Your living situation: Do you live in a house, apartment or condo?
Are you in a city, town or rural community?
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• The support available to you: Do you live alone or with a spouse or friend?
What kind of supports are in your community? How are your finances?
• Your needs and goals: In the short term, do you want to focus on daily
tasks, like bathing on your own? In the longer term, do you want to go
back to work? Travel?
Making the most of team meetings
Most of us remember only a small part of what we are told in healthcare
team meetings. So go prepared. Make a list of the questions you want to ask.
Make notes of each meeting — who was there, what was discussed and what
the next steps will be.
Bring someone with you who
can take notes and help you to
remember and understand what
happened at the meeting.
I can’t stress enough the
importance of keeping a journal.
– Louise, John’s care partner
Keep a journal or calendar of all
your appointments, meetings and tests.
Team members and their roles
The makeup of your stroke recovery team will depend on your needs and
the healthcare providers available in your community. You may not meet all
of the specialists in this list.
Neurologists are experts on brain issues.
Physiatrists are doctors expert in rehabilitation – the medicine of physical
recovery.
Neuropsychologists assess the impact of stroke on your cognitive or thinking
abilities. This expert can teach you how to help your brain recover and carry
out cognitive tasks.
Family doctors are experts in your general health.
Nurses work closely with you and your family during all stages of recovery
both in and out of hospital. They provide physical care, assessments and
coordination of care.
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Occupational therapists work with
you to make a plan to resume your
daily tasks, like dressing, bathing,
eating and leisure activities.
Physiotherapists work with you on
recovering your physical abilities,
strength and balance, for tasks such
as walking and getting around.
Speech-language pathologists help
you with swallowing, speaking and communication.
Social workers may help you with social and emotional problems. They may
also work with you and your family to plan your care after discharge. Other
types of people who help with planning your next step of care include case
managers and discharge planners.
Dietitians assess your ability to eat. They identify foods and meals that will
help recovery by taking into account your nutritional needs, swallowing
challenges and food preferences.
Pharmacists teach you about your medications, how to take them safely
and what side effects to watch for.
Educators help you learn about your stroke and its effects. They also teach
you, your care partner and family members about caring for you and
themselves. Any member of the team involved in your care might take
on the role of educator.
Recreational therapists support you in finding and adapting leisure activities.
Telestroke: Stroke care from a distance
Thanks to technology, people who live far away from stroke specialists have
options for long-distance care. Healthcare providers in one area can link
with consultants and specialists in another area for real-time assessments
and treatment. This can give you access to treatments and services at any
stage from the first few hours after a stroke, to rehabilitation, to care in the
community. Find out if this is an option for you.
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The first days
The first hours at the emergency department
The first hours after stroke can be very scary and
fast-paced. The healthcare team will be working
quickly to figure out the type of stroke you have
had so that they can take action to prevent further
damage to brain cells.
There are three goals for treatment in the first few
hours after a stroke:
• To stabilize you by managing breathing,
heart function, blood pressure, bleeding,
swallowing and other symptoms.
Learn about stroke
best practice from
Taking Charge – go to
• To make a diagnosis: You should receive
a brain scan soon after you arrive at the
hospital. This is usually a CT (computed
tomography) scan. The scan may show the type of the stroke (a clot or
a broken artery). A CT scan also finds the location of the stroke. Scan
results help your healthcare team choose the best treatment options.
Blood tests may be a part of your assessment.
• To provide early treatment: The type of treatment depends on the type of
stroke. Ideally, treatment takes place in a special stroke unit in the hospital.
Early treatment for ischemic stroke (clot)
If a clot caused the stroke, doctors will decide whether you could benefit
from a clot-busting drug called tPA (tissue Plasminogen Activator – also
known as Activase®). This medication can help reopen blocked arteries in
some people with ischemic stroke. It must be given as soon as possible,
within 4½ hours after stroke symptoms started. tPA can reduce the severity
of the stroke and reverse some stroke effects. Not everyone who has an
ischemic stroke can receive tPA.
After you receive tPA, the healthcare team will be watching extra closely for
the first day. To make sure the tPA worked, a repeat CT scan will be done
within a day or two after the stroke.
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Early treatment for hemorrhagic stroke (bleed)
Hemorrhagic stroke can be very serious and cannot be treated with tPA.
It has a longer recovery time than ischemic stroke.
A neurosurgeon will determine with the team if an operation is needed. This
might be needed to control the bleeding in your brain, to fix the damaged
artery or to lower the pressure in your brain.
The team will check often to make sure symptoms are not getting worse.
They will monitor blood pressure and check for alertness, headache, weakness
or paralysis, and other stroke symptoms.
The first days in hospital
Two-thirds of people with stroke are admitted to hospital. Each person
recovers at his or her own pace. Your care and length of stay is based on
your needs. A team of healthcare providers will work with you. Here is what
your in-hospital care will focus on:
Understanding what happened
During the first few days after your stroke, you might be very tired and need
to recover from the initial event. Meanwhile, your team will identify the type
of stroke, where it occurred, the type and amount of damage, and the effects.
They may perform more tests and blood work.
Monitoring and managing risk factors
If you had an ischemic stroke, you may be prescribed blood thinners
(anti-platelet medication such as ASA, acetylsalicylic acid or Aspirin®)
to prevent more clots.
Your blood pressure will be
checked regularly. If it is high,
medication may be prescribed.
If the team suspects your stroke
was caused by blocked carotid
arteries in your neck, they may do
scans. If necessary, they will have
you see a surgeon.
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Atrial fibrillation or irregular heart rhythm is a significant risk factor for
stroke. You may be tested for this during hospitalization.
If you have diabetes – a risk factor for stroke – the team will review how you
manage it.
The team will review other risk factors for stroke and work with you to set
goals and make a plan to prevent another stroke. (Learn more in Chapter 3
— Preventing another stroke.)
Preventing complications
The team will be checking for some of the more common complications
of stroke. Starting treatment early helps to prevent further complications.
If you are unable to move around in bed,
the team will be working to prevent clots
(deep vein thrombosis) from forming in
your legs. They will also try to prevent
pressure sores on your skin. As soon
as you are able, the team will work with
you to get you sitting, standing and
walking safely.
Weakness and balance problems may put
you at risk of falling. The team will assess your risk. They will work with you
to make sure you understand the risk and how to prevent falls. If the team
gives you a mobility device such as a walker, it is important to use it.
You should have a swallowing test before you are given any liquids, food or
medication. Problems swallowing, if not identified, can lead to complications
such as:
•pneumonia
• not getting enough to eat (malnutrition)
• not drinking enough (dehydration).
The team will want to identify any problems with bowel and bladder control
early so that training programs can start as soon as possible.
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Starting your recovery
Recovery starts once you are stabilized. The team will work with you to assess
your abilities and start developing strategies and therapies to begin your recovery.
Planning for your discharge
Team members will be looking to see how the stroke has affected your ability
to resume day-to-day life. They will start working with you to plan for the
next step in your recovery — whether you are going home, to rehabilitation,
or to long-term care.
What questions should you and your family ask?
During your hospital stay, ask lots of questions to make sure you understand
what has happened, what to expect and your role in recovery. Most of us
remember only a small part of what we are told in healthcare team
appointments and meetings. That’s why it is important to keep track of the
answers in a journal.
Here are some questions to ask:
• What type of stroke did I have? Was it caused by a blood clot or by
bleeding into the brain?
• What part of my brain is affected? What damage has the stroke done?
• What will my recovery be like? What treatments will I receive? Will I
need medication?
• What are the results of my tests? What do they mean?
• Did I receive tPA?
• Did the stroke affect my ability to swallow?
• What are my risk factors for another stroke in the next few months?
(This is especially important if you had a transient ischemic attack or
mini-stroke.)
• What is the next step in my care? Will I be admitted to hospital or
discharged home?
• Will I be assessed to see if I need rehabilitation?
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• Will I be given an appointment at a stroke clinic or with a stroke
specialist when I leave the hospital?
• What will I be able to do in the next few months?
• What can I expect one year from now?
• What skills will I need to take care of myself?
• What services and resources can help me and my family? How do I
access them?
Discharge – Preparing for the next step
Moving to the next step in your recovery can
be a stressful time. You may be moving to a
rehabilitation unit, going home or going into
long-term care. It helps to be prepared and to
have a good discharge plan. You and your family
play the most important role in making
your plan.
To find the right place, you and your team
need to consider these factors:
• the effects of your stroke on your
mobility and ability to care for yourself
• the effects of your stroke on your
thinking, speech and ability to
communicate
Use the
Post-stroke checklist
to help make sure you
receive the care you
need - go to
• how much you have recovered so far
• your living situation. Do you live alone? Do you have family who can
stay with you when you come home?
Planning to go home
Many people with stroke are able to return home, either from the emergency
department or eventually from inpatient hospital care or rehabilitation. If you
25
are going home, it helps to have
family members and friends
available to support you.
If you are being discharged home
from the emergency department,
make sure you have appointments for:
You may be able to go home
• a stroke specialist
for a trial visit of a day or two
• a stroke clinic where they will look
before you leave hospital. This
at the risk factors that played a
visit helps you to decide if you
role in your stroke
are well enough to go home.
• any further tests needed
Use this time to start building
• a rehabilitation assessment, if
new routines to help you live
needed.
with the effects of your stroke.
Think about changes that need
to be made to your home. For
example, you may need to have furniture in some rooms moved for safety.
Planning for rehabilitation (rehab)
Rehab soon after a stroke helps you recover best. Many people need some
rehabilitation. This could involve:
• a move to a specialized rehabilitation hospital
• going home and attending a community program
• having rehab at home.
What you need will guide your rehabilitation plan.
Planning for long-term care
Some people have a stroke with more severe
damage. They may need the extra help with
personal care that long-term care provides.
Making your discharge plan
Wayne
Your role in making a good transition
Before you leave any level of care you need to have a plan for the near future.
Your team should work with you and your family to set realistic goals for the
26
next weeks and months. Make sure all of your questions and those of your
care partner and family have been answered. You should have all of the
following information written down.
Where you are going
• home, in-patient rehabilitation, long-term care or some other location
Your healthcare contacts
• list of your appointments, the reason for each appointment, the
location, contact name and phone number
• names of your therapists, their contact information and why you are
seeing them
• who to contact if you have any questions.
Recovery and rehabilitation needs
• your recovery needs – what do you need to continue to recover?
• list of devices that may help you and where to find them
• any safety concerns
• description of the types of rehab you need and where you will receive it
• what you can do on your own
• a list of services in your community for people with stroke and their
care partners.
A plan to prevent another stroke
• a review of your risk factors
• your goals and plan for reducing risk
• a follow-up appointment about managing your risk factors
• a list of signs of stroke and what to do if they occur.
A list of your medications including
•names
• what they are for
• when to take them
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• how to take them
• possible side effects
• foods you might need to avoid.
Daily life routines
• a list of assistive devices to help you
• a list of strategies you can use right now for daily routines such as
getting around, eating, bathing and going to the toilet.
Tips for recovery
• Know your abilities and limitations.
• Decide on your goals and priorities.
• Ask your therapist what you can do on your own to help you keep
moving forward. When your therapy sessions end, ask when you
should consult a therapist again. Remember to balance your activity
and get rest to avoid fatigue.
• Keep track of your progress.
• Celebrate success!
Stay positive. Do your best.
– Wayne
The first weeks
Starting rehabilitation (rehab)
Your recovery starts as soon as you are stabilized. Rehab is the process
and approach that helps you to recover as many abilities as possible. It can
be a formal program, or it might include exercises and routines that you do
at home.
Recovery is a long-term process and varies from one person to the next.
For some, it can take several months. For others, it may take years.
28
Start rehab as soon as you can. Over time, you will learn new skills, activities
and exercises to “retrain your brain”. You will receive help with physical
abilities, such as hand use, and cognitive abilities, such as memory and
thinking. It will also address communication problems and emotional issues.
In the first few weeks after stroke, some abilities may start to return as your
brain naturally recovers, including:
•swallowing
•speaking
• understanding what people
are saying
• moving an affected arm or leg.
Recovery includes both body and mind.
Your desire to get better and to work
hard are important in reaching your
recovery goals.
Where does rehab take place?
Rehabilitation can occur in many places including:
• a special floor of a hospital known as a rehabilitation stroke unit
• a rehabilitation hospital
• a clinic or office in your community
• your home, with home care services.
Why does rehab work?
The brain is able to make up for functions lost in damaged areas. It does this by
reorganizing and rewiring itself. This ability is called neuroplasticity. The goal of
stroke rehabilitation is to help you recover as much function as possible.
To make these changes in the brain you need to train it by repeating specific
exercises and activities. The type of rehab you do depends on:
29
• how severe your stroke was
• the part of your brain that was
damaged
• the effects of the stroke on your body,
mind and emotions
• your general health
• how hard you are able to work
to reach your recovery goals.
How long will it take?
There is no schedule for stroke recovery. Your stroke is unique to you and
your recovery will move at your own pace, based on your own situation.
You will likely find that you keep making progress for many months and even
years after your stroke. The more you practice doing the tasks of everyday
life, the easier they become over time.
Be prepared to work through plateaus
Your recovery may slow down or seem to stop for a time. You may even
feel you are getting worse. This is a common feeling. Your therapist may say
you have reached a plateau and may reassess your abilities. Do not despair.
Recovery often continues if you keep working on your therapy.
Treat a plateau as a signal to reassess, not an end to recovery. Look at what
you have achieved. Figure out what
you need to change to move forward.
Do you need to change your goals or
Whatever you put into your
do you need to change your strategy?
recovery, you get out of it.
Talk with your therapist about this and
– John
make a plan to move forward together.
30
3
Preventing ANOTHER STROKE
Wayne
YOUR STROKE JOURNEY | 3. Preventing Another Stroke
31
3.
Preventing ANOTHER STROKE
Having a stroke or TIA (transient ischemic attack or mini-stroke) puts you
at a higher risk of having another one. You can reduce that risk. Here’s how:
• Know the signs of stroke so that you can get help quickly.
• Learn your risk factors for another stroke.
• Learn what you can do to lower your risk.
• Find out how to make healthy choices in your life.
Know the signs of stroke
Stroke is a medical emergency. Recognize and respond immediately to any
of these signs. Call 9-1-1 or your local emergency number.
LEARN THE SIGNS OF STROKE
is it drooping?
can you raise both?
is it slurred or jumbled?
to call 9-11 right away
© Heart and Stroke Foundation of Canada, 2014
Some treatments that can help reduce the effects of a stroke are time
sensitive. For example, a person having a stroke caused by a blood clot can
receive a clot-busting drug within four and a half hours after symptoms
32
begin. That makes it important to know the signs of stroke and to call
9-1-1 right away. Do not drive — an ambulance will ensure you get to a
hospital most able to treat stroke.
If you are alone at home, carry a portable phone or wear a medical alert system
device button around your neck that you can press when help is needed.
Know your risk factors
Each person has their own risk factors for stroke. If you know what yours
are, you can take action to manage them and reduce your risk. Talk to your
healthcare team about your risk factors. Together, you can identify the
actions you can take to improve your health.
Factors you can change
• unhealthy diet
• a diet high in salt
• being overweight
• physical inactivity
•smoking
• excessive alcohol intake
• recreational drug abuse.
• high stress level
Try these e-tools to help you
identify and manage your risk:
Go to heartandstroke.ca/risk
for a 10 minute quiz that gives
you a personal report on how
to reduce your risk.
The e-tool at heartandstroke.ca/bp
helps you to learn how to manage
your high blood pressure.
Medical conditions that are risk factors
Some medical conditions increase the risk of stroke, but you can manage
them with medication, treatment and by making healthy choices.
High blood pressure (hypertension)
High blood pressure can weaken your artery
walls, increasing your chances of a stroke. If you
keep your blood pressure below target levels,
you can lower your risk of stroke by 30-40%.
Learn about hypertension
at heartandstroke.ca/
bloodpressure
33
Atrial fibrillation (Afib)
This is an irregular heart rhythm. It can
cause small clots to form in your heart and
travel to your brain. It increases your risk of
ischemic stroke three to five times.
Learn about Afib at
heartandstroke.ca/AFGuide
Diabetes
This disease can affect your blood vessels
and in turn increase blood pressure.
Diabetes also increases the chance of
plaque forming in your blood vessels.
Learn about diabetes at
diabetes.ca
Blocked carotid arteries
The large arteries in your neck become narrowed, making it difficult for the
blood to flow to your brain.
High cholesterol
Learn about cholesterol at
This can lead to a buildup of plaque in the
heartandstroke.ca/cholesterol
artery walls (atherosclerosis). The plaque
makes it harder for blood to flow through
your body, putting you at increased risk of stroke.
Sleep apnea
When people have interrupted breathing during sleep, it lowers the amount
of oxygen reaching the brain. It can also cause high blood pressure.
Birth control pills or hormone replacement therapy
Women who take drugs containing the hormone estrogen have an increased
risk of clot formation and therefore stroke.
Factors you cannot change
• having had a previous stroke or TIA or mini-stroke
• family history of stroke or blood vessel problems
• age — the older you are, the higher your risk of stroke
• sex — until women reach menopause, they have a lower risk of stroke
than men
34
• ethnicity — First Nations people and people of African or South Asian
descent are more likely to have high blood pressure and diabetes.
You are at greater risk of heart disease and stroke than the general
population.
Make healthy choices
Small, healthy changes in your daily routine can decrease your risk for
another stroke. Making changes is always challenging. Your healthcare team
can help you figure out what risk factors you should focus on first and set
goals that you can reach.
Don’t try to change yourself overnight. Start with something that is relatively
easy and build on your successes.
Healthy food choices
Even small changes to your diet can add up to big health benefits. Balanced
meals and healthy snacks will help you:
• increase your intake of healthy foods
• manage your weight
• keep your blood pressure down
• control your blood sugar levels
Learn about healthy food
choices at
heartandstroke.ca/recipes
heartandstroke.ca/dash
• lower your cholesterol
• increase your energy level.
All of these factors reduce your risk of
stroke. If you need help making healthy
choices, consult a dietitian. Here are some
tips on healthy eating:
Eat more vegetables and fruit
Vegetables and fruit are rich in vitamins,
minerals and fibre. They are low in
35
calories, fat and salt (sodium). They help to reduce cholesterol, lower blood
pressure and maintain a healthy weight.
Choose foods high in fibre
The best sources of fibre are vegetables, fruits, whole grains and legumes
such as lentils. Fibre will help to reduce your cholesterol, lower your blood
pressure and maintain a healthy weight.
Lower sodium intake
Reducing salt (sodium) in your diet can bring down your blood pressure
and cut your risk of stroke and heart disease by about a third. Most sodium
comes from packaged food and eating out. Here are some tips to help
reduce salt.
Choose:
Limit or avoid:
• foods with less than 200 mg
of sodium per serving. Read
labels to check the sodium
amount.
• processed and packaged
food such as canned soups,
bacon, pickles and sandwich
meats
• seasonings other than salt
and soy sauce to flavour your
food. Use garlic, lemon juice
or herbs instead.
• take-out food
• salty snacks like potato chips.
• unsalted nuts as a healthy
alternative to snack foods.
• low-salt (140gm per serving)
recipes to cook at home.
Choose healthy fats
Fats are not all the same. Saturated and trans fats raise cholesterol
levels. Other types of fat or oil called unsaturated fats can help prevent
plaque from building up in your blood vessels.
36
Choose:
Limit or avoid:
• lean meats and more fish
• deep-fried foods
• low-fat dairy products
• foods with saturated and
trans fats
• unsaturated fats, such as
olive oil, soybean oil, canola
oil and peanut oil
• ghee and butter.
• foods with less than 3 grams
of total fat and less than 2
grams of saturated fat per
serving. Read food labels to
check for amounts of both
types of fat.
Eat less added sugar
Added sugar provides energy in the form of calories, but it has no other
nutritional value. If we do not use the calories, we store them in the form
of fat. There is no specific amount of sugar recommended as a part of a
healthy diet. Eat less sugar to maintain a healthy weight.
Choose:
Limit or avoid:
• water or unsweetened tea
• baked goods
• lower sugar options. Check
the amount of added sugar
on food labels. There are
4 grams of sugar in one
teaspoon.
• sweetened beverages,
including pop and fruit juice.
Eat moderate portions
Limiting your portion size is a good idea, whether you are at home or in
a restaurant.
37
Let your hands help you measure healthy portions.
Grains, Starches & Fruits:
Your FIST can measure a serving of grains
such as quinoa or rice, starch such as potatoes
and fruit such as melon or apple.
Meat and Alternatives:
The PALM of your hand can measure a serving
of meat such as chicken or meat alternatives
such as tofu.
Vegetables:
Your HANDS held together can measure a
serving of vegetables such as kale or broccoli.
Fats:
Your FINGERTIP can measure a serving of fat
such as margarine or ghee.
Adapted from the “Portion Guide” with permission of the Canadian Diabetes Association
• Use smaller plates, bowls, and cups.
• Fill up half of your plate with vegetables (not counting potatoes).
Fill a quarter of the plate with whole grains such as brown rice or
whole grain pasta. The last quarter of the plate is for meat or meat
alternatives such as beans, tofu or low-fat cheese.
Vegetables
Meat &
Grains
Alternatives
38
• Avoid supersized portions and second helpings.
• In restaurants, you can choose appetizer portions. You can also ask for
a small portion or plan to take some home.
Try new recipes
For healthy recipes go to heartandstroke.ca/recipes.
Be more active
Regular physical activity for 150 minutes
or more a week is a great way to
maintain a healthy weight, reduce
high blood pressure, lower cholesterol
levels, manage diabetes and manage
stress. It can cut the risk of heart
disease and stroke by 30%.
Talk to your healthcare team about the
right way for you to get active. The
team will factor in your abilities, your
health and your interests. They will
help you to come up with a plan that
is enjoyable and safe. Ask about
programs in your community that
would meet your needs and abilities.
Dawn
No matter what your state of health, there
is something you can do to stay active.
Maybe you can do yoga or tai chi. Maybe
you can go for more walks. There are
exercises you can do from a chair or in bed.
Start with 10- to 15-minute sessions.
Increase the time, frequency and intensity
as you grow stronger. Eventually, you can
work toward the recommended 150 minutes
total per week.
John
39
Quit smoking
Smoking and exposure to second-hand smoke increase the risk of stroke.
Twenty minutes after your last cigarette your blood pressure and heart
rate will drop reducing your risk. Quitting will decrease the plaque in your
blood vessels.
Quitting is one of the best things you can do to reduce your risk of another
stroke. You might be afraid that quitting will be too hard, but there is lots of
help available to you when you are ready. Here are some tips to get started:
• Think through the pros and cons of quitting. Try to imagine how much
better you would feel and how proud you would be if you could quit.
• Understand your smoking habits. Smoking is an emotional as well as a
physical habit. What are the triggers that give you the urge?
• Make a plan for quitting. Your healthcare team can tell you about
programs to support you. Call 1-866-366-3667 to talk to someone
about quitting. There are lots of helpful booklets and online programs.
• Your health-care team can help with nicotine replacement and other
therapies.
• Involve your family and friends for support.
Drink less alcohol
Heavy drinking and binge drinking are risk factors for high blood pressure
and stroke. Alcohol may also cause problems by interacting with your
medications.
Follow the guidelines for moderate drinking:
• 10 drinks a week for women, with no
more than 2 drinks a day most days
• 15 drinks a week for men, with no more
than 3 drinks a day most days
• Always consider your age, body weight
and health problems that might suggest
lower limits.
40
“A drink” means:
341 mL / 12 oz (1 bottle)
of regular strength beer
(5% alcohol)
142 mL / 5 oz wine
(12% alcohol)
43 mL / 1½ oz spirits
(40% alcohol)
Be aware of your drinking habits. Plan non-drinking days each week. Track
the number of drinks you have every day.
Talk to your healthcare team if you would like to find a program to help you
deal with alcohol problems.
Quit recreational drug use
Recreational drug use increases your risk of another stroke. Talk to your
healthcare team about programs in your community to help you quit.
Manage stress
We know that some people who have high
levels of stress or prolonged stress have higher
cholesterol or blood pressure. They may be
more prone to narrowing of the arteries
(atherosclerosis), a stroke risk factor.
Music helps me to
relax and feel good.
– Carol
Here are some tips for managing stress:
• Ask yourself what causes your stress. If you are aware of its cause, can
you eliminate it? If not, find ways to manage it?
• Talk about your feelings to family, friends or a healthcare team member.
• Do things that you find relaxing, such as listening to music, reading,
walking or meditation.
41
Make a plan for healthy changes
The key to making changes is developing healthy habits that stick. The
change should become a habit that you do every day without thinking, like
brushing your teeth. Here are seven tips for planning a change.
1. Set a goal
I always make short-term,
easy goals so I can succeed.
Long-term goals can be
discouraging. – Lindsay
Your health-care team can help
you decide which lifestyle changes
would have the greatest impact on
your overall health and risk of
another stroke. Make sure it is a change that you feel confident you can achieve.
Choose one goal that you can achieve in a short period. For example, “I will
walk around the block once a day for a week.” Make the goal specific and
realistic. Set yourself up to succeed!
Your goal should also be something you can measure, so that you will know
you achieved it. For instance, “I will eat seven servings of vegetables and
fruit each day.” Instead of “I will try to eat more vegetables and fruit.”
2. Figure out how you will achieve your goal
Planning how you will achieve your goal is one of the most important steps
to success. Ask yourself, “What do I need to do to reach my goal?”
Make a plan that sets out specific steps to success. For example, if your goal
is to eat seven servings of vegetables and fruit every day, you could break it
down this way:
How many servings do I eat now?
I eat four per day. I will need to add three to reach my goal.
Ideas to add servings each day:
• Eat salad for lunch.
• Have a smoothie for a snack.
42
• Add one serving of steamed vegetables,
for a total of two, at dinner.
• Make vegetable soup for lunches.
• Have a piece of fruit for an afternoon snack.
• Eat a piece of fruit for breakfast each morning.
• Choose a vegetable stir-fry when out for dinner.
What I can do to make it happen
• Plan my meals for the week.
• Shop with a list that includes extra fruit and vegetables.
• Wash and cut up fruit and vegetables ahead of time.
• Keep track of the fruit and vegetables I eat each day.
3. Prepare for obstacles
Try to think ahead about the challenges you might face. Develop a plan to
meet them. For instance, you may have to miss a morning walk if you have a
doctor’s appointment. Plan to walk after lunch or dinner instead.
4. Get support
Ask family and friends for support. If you have a partner, ask them to adopt
the change as well. Here are some more tips on reaching out for support:
• Ask a family member, friend or neighbour to go for a walk with you.
• Ask for help to cut up
vegetables and fruit.
• If you do not buy the
groceries, ask whoever does
to buy only healthy snacks.
My wife learned how to buy
groceries a different way.
Making healthier choices for
all of us. – Ken
• Ask your healthcare team for
information and coaching. For
instance, your physiotherapist can give you a safe exercise
routine. Your dietitian can help with healthier food choices.
43
5. Track your progress
The more you track your progress, the greater your chances of achieving your
goal. Keep a log or record of what you are doing to work toward your goal.
If your goal is to eat seven servings of vegetables and fruit each day, this simple
log will track your vegetable and fruit servings for each day of the week.
Date
Vegetables and fruit
Monday
Breakfast – 2
Lunch – 2
Snack – 1
Dinner – 2
Total – 7
Tuesday
Breakfast – 2
Lunch – 1
Snack – 1
Dinner – 2
Total – 6
You only need to track the changes until you feel that they have become
a regular habit. That usually takes three to six weeks.
6. When things go off plan, keep going!
It can be hard to stick to a plan if you are tired, stressed, or not feeling well.
Setbacks are a normal part of the process — they are not a failure. Don’t give
up. Here are some tips to help you turn a setback around:
• Remind yourself why you want to make the change. Think about how
important it is.
• Look at what you’ve achieved so far. It is human nature to focus on
the things we don’t get right, but try instead to give yourself credit for
what you have accomplished.
• Start keeping a log again.
44
• Look at what caused the setback. What can you do if it happens again?
Look for support. Ask your family to help you get back on track.
• Check your goals again. Are they specific, realistic and measurable?
Do you need to change them?
• Do you need to change your plan?
7. Celebrate success!
Whenever you make a small step toward your goal, pat yourself on the back
and congratulate yourself. Reward yourself with something you like — time
with a friend or a favourite movie.
Work with your healthcare team
Know your numbers
Your healthcare team uses numbers as one way
to track your health — numbers such as your
blood pressure reading and your blood test
results. Get to know what these numbers mean.
Talk to your team about the targets they feel are
right for you. Ask about your results and track
your progress.
Take your medications as prescribed
Managing your medications properly will help you to avoid another stroke.
• Take all medications unless your doctor tells you to stop. If you have to
stop on your own for some reason, tell your doctor or nurse practitioner
right away.
• Mark your calendar when your prescription runs out. Make sure you
have an appointment to renew your prescription before you run out.
45
• Make sure your doctor knows about all of the medications that you
take. This includes prescription drugs, over the counter drugs, and
herbal remedies.
• Always check with your pharmacist when you buy anything over the
counter, to make sure there are no problems taking it with your
other medications.
• Keep a complete list of the names of your medications. Record the
dose (how much) and how many times a day you take it. Keep this list
in a handy spot in case your family or emergency personnel need
the information.
Tips for keeping your medications organized:
• Get a pill container (dosette) and fill it weekly.
• Ask your pharmacist to prepare your
medications in a blister pack with individual
doses. This only works well if you are able to
open the blister packaging on your own.
• Take your medication at the same time
every day.
• Use visual reminders. Keep your pills where
you will see them often, such as on the
counter. Or put a sticker on the bathroom
mirror to remind you.
• If you are going out, make sure you have your medication with you.
Stay in touch with your healthcare team
Make regular appointments with your doctor or nurse practitioner. Report
any changes in your condition. Ask questions. Be sure to ask for any
prescription renewals you need.
46
4
Living
WITH PHYSICAL
CHANGES
Mathew and John
YOUR STROKE JOURNEY | 4. Living with Physical Changes
47
4.
Living
WITH PHYSICAL
CHANGES
Stroke is a major life event. It affects each person differently. There may be
changes in how you live day-to-day. You may need to find new ways to do
things — your new normal.
This is a time to be creative in how you go about your daily life. Talk to people
around you about how you feel as you adjust. Get ideas from other people
with stroke. They can be a helpful support.
Communication
We communicate our thoughts, ideas
and feelings to others in many ways.
We do it with words — spoken or
written. We communicate through the
use of voice, hand gestures, face and
body movements.
My biggest frustration today
is knowing what I want to say
and not being able to say it,
I now need a script or notes
to communicate, I can’t be
spontaneous. – Lou
After a stroke, communication problems are common. You may find yourself
using the wrong word or not able to create sentences. Or you may repeat
yourself. You may misunderstand what people are saying. You may find that
you are unable to read and write. Aphasia is the term given to these problems
with communication.
You may also find yourself having slurred speech. Dysarthria is the term given
to this problem with speech.
Aphasia
There are two types of aphasia:
To learn more
about aphasia go to:
aphasia.ca
Expressive aphasia
You know what you want to say but the words come out wrong. The words may:
• be jumbled
48
• not make sense
• be totally different from the words you wanted to say.
Receptive aphasia
• You can hear spoken words and see written words, but have a hard
time knowing what they mean.
• You may also take word meanings very literally and be unable to
understand some forms of humour.
Some people with stroke may have both expressive and receptive aphasia.
Either type makes it hard to read, write, work with numbers, join in
conversation, or share thoughts and feelings.
Aphasia can be mild or severe, depending on your stroke. It may be temporary
and improve quickly. For some people, it is long-lasting or permanent.
Aphasia can be very frustrating. You may find it hard to enjoy time with
family and friends, or even to ask for what you want or need. You may find
that some people treat you differently.
Try to let people know how you feel. Make sure they know you are still able
to join in conversations in your own way. Get those closest to you to read
this section. This will help them understand what you are experiencing and
give them ideas for how to communicate with you.
Your first goal may be to find a way to communicate with your family
and team. Right after the stroke, you may need to use other forms of
communication such as picture boards, hand signals, or using a pencil
and paper to draw or write words.
Strategies for communicating
Find out what part of your communication
is affected. The therapist on your healthcare
team who can help you with communication
is called a speech language pathologist. If
you are not seeing one, get a referral.
49
Your therapist will help identify what type of communication and speech
problem you have. Then they will develop a plan to help you regain
communication skills. Here are some areas they may work on:
• improved understanding in conversation — asking you to match
pictures to a spoken phrase
• improved ability to use the right words — asking you to name things
you see in pictures
• improved ability to read — working with you to read a short paragraph
and answer questions about it
• improved ability to write — practicing skills needed to write
• improved ability to speak clearly — exercises to strengthen the muscles
involved in speech.
Make a plan with your therapist. They can show you how to practice to
improve your communication skills. Make sure your family and friends know
about your plan and how they can help you communicate with them.
Tips for staying connected
Here are some strategies that people with aphasia use to communicate:
• Focus on one task. Don’t try to multi-task.
• Write things down before saying them.
Try using short written notes. Keep a
pencil and paper handy.
• Try using flashcards with keywords and
pictures, like TOOTHBRUSH.
• When people communicate with you in
writing, they should use markers that make
it easy for you to see the words. When
you are writing, using a pencil is easiest.
• Use Scrabble™ tiles to spell out words.
• Not able to write? Try gestures, hand signals
and simple picture boards to point at.
• If you have trouble finding words, try
looking around to find clues from your environment.
50
• Computers and smartphones have apps to help with aphasia. They speak
words that are typed. Or they may help you find the name of an object.
Tips for family and friends
• get the person’s attention
• speak slowly and clearly
• give one idea at a time
• use yes or no questions
At work, people often
bombard me with things
to do for them, it sends my
stress level through the roof,
even today. Let me do it my
way at my own pace. – Keitha
• avoid open-ended questions.
Instead of asking, “What would
you like to drink?” ask, “Would
you like tea or coffee?” Ask
“Can you show me?” Gesture or point to an item
• repeat or re-word sentences.
• write down your message with a black marker
• don’t interrupt
• pay attention to body language
Where to get support:
Speech language pathologists are the team members who specialize in
helping you communicate.
Check if there are aphasia support groups that meet in your community.
Challenges with arms and legs
The effects of stroke can leave one side of your body paralyzed or weakened.
This poses challenges to your independence.
Problems with muscles
Stroke can affect muscles in your arms, legs, hands and feet. The muscles
can shorten and become very tight. This is called spasticity. Or they might
become limp and soft (flaccid).
51
These muscle changes can cause problems with the joints they support.
When there is low muscle tone around the shoulder joint, it can lead to
shoulder subluxation — a partial dislocation of the shoulder joint. This can be
prevented with proper movement and positioning. You should never force an
affected limb to move. Talk to your team about strategies.
Muscle problems can also cause shoulder or hand syndrome — a stiff,
swollen and painful shoulder or hand and wrist.
Treatment for muscle problems may involve:
• proper positioning
• using splints or orthotics – special
devices that help position joints
•physiotherapy
•exercise
• injecting botulinum toxin (Botox®, Xeomin®)
Muscle spasticity is increased muscle tone or stiffness,
and an increased resistance which may lead to uncontrolled, awkward
movements. It may also lead to a tight closed fist. It is important to make
sure the hand stays clean and dry, and that the nails are well trimmed. Good
hygiene can prevent skin damage. Talk to your healthcare team about the
best way to manage your spasticity and take care of your contracted hand.
The members of your healthcare team who can help may include a:
• physiatrist (rehabilitation doctor)
• occupational therapist
•physiotherapist
•nurse.
Getting around (mobility)
Getting around your home and community is an important part of your
independence. After a stroke, muscle, strength and balance problems may
make it hard to get around independently. Some people may need assistive
devices such as a walker or wheelchair. No matter how you get around, it is
important to keep safe.
52
Mobility aids
A mobility aid is any assistive device that helps you get around. Make sure it
meets your needs, both inside and outside of your home. All devices need to
be fitted to you. You will also need instructions on how to use them safely.
Your physiotherapist or occupational therapist can help with this.
Orthotics and braces
Orthotics or braces can be helpful for people
who have weakened or spastic muscles after a
stroke. They can support and stabilize the limb
to help it function.
Walkers
Walkers can provide you with support when walking. Some have no wheels,
two wheels or four wheels. Your physiotherapist will make sure you get the
one that is right for you and will show you the correct posture when using it.
Canes
There are different types of canes.
Some have a single prong at the
end. Some canes are balanced
with three prongs. Some have a
rubber tip, with a claw you can
attach for walking in winter.
Wheelchairs
There are two types of wheelchairs:
manual and electric. A manual chair
is fine if you have the strength to
wheel it yourself, or if someone will be pushing you. Electric wheelchairs are
an option if they fit in your home and you are able to operate one safely.
If you need a wheelchair, you should be fitted by a member of your healthcare
team. They will show you how to sit properly and check to see if you need
a seat cushion or back rest. Proper positioning prevents injury and pressure
sores. You will need to learn to transfer or move safely from your wheelchair
to the toilet, bed or another chair.
53
You will need to plan how to get around your home in a wheelchair. Is there
enough room to pass through doorways and turn around?
Make sure that your wheelchair has a seatbelt — and use it. A team member
will help you learn how to transfer in and out of the chair safely.
An electric scooter may be an option for you.
Your occupational therapist and physiotherapist will help you choose and fit
your mobility devices. They will train you to use them safely.
Provincial or private insurance plans may fund mobility devices.
Local service groups sometimes lend equipment.
Swallowing problems (dysphagia)
A problem with swallowing food
and drink is called dysphagia. This
The swallowing problems were
happens when you have trouble
the scariest part of my recovery.
using the muscles in your throat
I had to experiment to find foods
or your mouth to move food and
that worked for me. – John
drink around. Or, you may have lost
feeling in your mouth. Dysphagia
can put you at risk of choking or inhaling food (aspiration). This can lead to
pneumonia. Dysphagia can also put you at risk for not getting enough to eat
(malnutrition) and not getting enough to drink (dehydration).
If you have dysphagia, the speech language pathologist, dietitian or
occupational therapist on your team will work with you. They will help
develop a plan to make sure you are able to safely eat and drink.
The plan will tell you what the best food consistency is for your swallowing
abilities. For some, softer foods with a finer consistency are easier to swallow.
Examples are mashed potatoes, ground meat or stewed legumes such as
lentils or dhal.
54
Some people find thickened liquids easier to
swallow. Each person is different — ask your
team what is best for you.
Here are some safe eating tips:
• Make sure you are sitting up straight.
• Remove distractions, such as TV, radio
or cell phone.
• Do not talk when chewing. Ask people
not to ask questions or distract you
when you are eating.
• Cut food into small bites. Use a teaspoon instead of tablespoon to
make sure you are not putting too much in your mouth at once.
• Chew food completely on the stronger side of your mouth. Swallow
before taking the next bite.
Getting enough liquids
Sometimes when drinking is challenging, people avoid it. This
can lead to problems like dehydration or constipation. Make
sure you drink six to eight cups a day of non-caffeinated,
non-carbonated fluids that are easiest for you to swallow. Keep
a water bottle or travel mug filled with the right liquid close by
at all times. Take sips often throughout the day to stay hydrated.
Speech language pathologists, dietitians and occupational therapists can
help assess your eating and swallowing problems.
Dietitians can help you find healthy food choices that fit your situation.
55
Bladder and bowel problems
Incontinence means poor control of the bladder and bowel. It affects many
people after a stroke. Sometimes incontinence is caused by your brain having
trouble communicating with your body. Also, you may have difficulties getting to
the bathroom or taking clothes off in time. If you already had bowel or bladder
problems before the stroke, the incontinence may have become worse.
Sometimes medication can affect your bladder and bowel. If that is the case
for you, speak with your doctor about it. Do not stop any medication without
first speaking with your doctor.
Many people recover control of their bladder and bowel function soon after
stroke. Some may still have problems several months later.
Bladder problems
There are seveal types of bladder problem:
• Urinary incontinence is the loss of
control of your bladder.
• Urinary frequency is the need to use
the toilet more often.
I am still struggling
somewhat with my
bladder. Two and a
half years later. Again,
embarrassing. – Keitha
• Urge incontinence is the sudden need or urge to urinate.
• Functional incontinence means trouble getting to the toilet in time
or trouble getting clothes off soon enough.
• Night time (nocturnal) incontinence is the need to use the toilet
several times during the night, or wetting the bed at night.
• Stress incontinence is loss of bladder control due to pressure on the
abdomen. For example, wetting yourself after sneezing or exercise.
Urinary tract infection
Problems with emptying the bladder can lead to urinary tract infection.
Contact your doctor if you see signs of infection. Symptoms include:
• needing to use the toilet often, even if the bladder is empty
• having accidents
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• pain or burning while urinating
• stomach cramps
• cloudy urine or urine with a strong smell
• fever or increased body temperature
• for people with aphasia, a change in behaviour, such as agitation.
Bowel problems
Bowel problems can occur after a stroke:
• Constipation develops when bowel movements do not occur as often
as they used to or you have trouble passing stools.
• Diarrhea is loose bowel movements.
• Bowel incontinence is the loss of control of the muscles around your
lower bowel.
• Functional bowel incontinence means trouble getting to the toilet in
time or trouble getting clothes off soon enough.
Strategies for dealing with bladder and bowel problems
Talk to your healthcare team about what is causing your problem. They can
help you understand the cause and suggest strategies to deal with it. Here
are some common strategies:
Make getting to the bathroom easier
• Clear a path. Remove any items, such as furniture
or mats that block your way to the toilet.
• Install a night light.
• Use a raised toilet seat. These come with or
without armrests and make it easier and safer
to get on and off.
• If getting on or off the toilet is too hard or
unsafe, use a commode (portable toilet) or
urinal. This can be particularly helpful at night.
Commode
57
When control is lost
If you are unable to control your bladder, continence products will help keep
you dry. Be sure to use continence products, not menstrual pads. Continence
products are better at drawing the urine away to promote healthier skin.
Constipation
To help prevent constipation:
• Make sure you drink enough liquids (6 to 8 cups per day).
• Increase the amount of fibre in your diet. Whole
grains and legumes such as lentils and kidney
beans, are good sources of fibre.
• If water and dietary fibre do not help prevent
constipation, speak to your healthcare provider
about over-the-counter products that may
be helpful.
• Keep as active as you can.
Retraining
Your healthcare team may suggest retraining. This involves going to the
toilet on a regular schedule, for example every two hours for bladder, every
morning for bowel.
Refusing liquids is not a good strategy
No matter the cause of your problems, it is very important to drink enough
liquids to prevent dehydration — six to eight cups per day.
Physiotherapists can teach you pelvic floor exercises that strengthen the
muscles you need for control.
Occupational therapists can help make it easier to get to and use the toilet.
Nurses can help with skin care and tips for retraining.
Dietitians can help you choose high-fibre foods and plan ways to drink
more liquids.
58
5
Changes
LIVING WITH
TO
EMOTIONS, ENERGY, COGNITION
AND PERCEPTION
Ramona and Ramon
YOUR STROKE JOURNEY | 5. Living with Changes to Emotions, Energy, Cognition and Perception
59
Changes
5. LIVING WITH
TO EMOTIONS,
ENERGY, COGNITION, AND PERCEPTION
Stroke has effects that you cannot see. Changes to the way you feel and
think can have a big impact on your life.
Emotional changes
The emotions you have throughout your
recovery can be intense and change
quickly. Intense feelings are a normal
reaction to a big health event, but they
can also be a result of brain injury from
a stroke.
It is sometimes harder
to deal with the invisible
deficits such as depression,
emotional changes,
problem solving as they
are not apparent to the
outside world. – Lou
Your care partner and close family and friends will likely go through many
emotions too. They are on a parallel journey with you.
Feelings you may experience after stroke:
Anger: Thinking “Why has this happened to me?” or “What did I do to
deserve this?”
Anxiety: Worrying about the future or how well you will recover.
Denial: Acting as if there is nothing wrong because it hurts too much to face it.
Embarrassment: Feeling awkward and ashamed that you are not able to
function as you did before.
Fear: Worrying about having another stroke.
Frustration: Losing patience with yourself for not being able to do things
you used to do. Losing patience with others for treating you differently,
or not understanding how you feel or what you want.
Grief and sadness: Feeling sorrow about your loss of ability, or sadness
about not having the same future you once saw for yourself.
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Guilt: Feeling guilty about the changes your stroke has caused in the family,
or about your need for more support. Also, a stroke can sometimes make
people feel guilty about things that happened a long time ago.
Loneliness: Feeling that you are all alone and that no one understands what
you are going through.
Controlling emotions after a stroke
Damage to the brain from a stroke may also affect your ability to control
your emotions. This is called emotional incontinence or lability. You may
find that you cry suddenly or frequently for no reason. Or you may respond in
a different way than you want to. For example, you may laugh at a sad time.
Depression
My faith has provided
There is a difference between sadness and
me with strength in
depression. Sadness comes and goes. It is
accepting my new
normal to feel sadness and a sense of loss
normal. – Ramon
after a stroke. Sadness that doesn’t go
away may mean depression. It is common
for stroke survivors or their care partners to develop a true clinical depression.
Know the signs of depression and contact your doctor if you see them.
Depression can slow down your recovery. There are treatments that can help.
Some physical signs of depression:
• changes in your sleep pattern (not sleeping well, or sleeping more
than normal)
• changes in appetite
• gaining or losing weight without
trying
• feeling tired, having much less
energy
• feeling restless
• persistent headaches
• chronic pain or digestive problems
(such as stomach aches, nausea, constipation or diarrhea).
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Some emotional signs of depression:
• feeling sad, anxious, irritable, nervous, guilty,
worthless or hopeless
• not feeling interested in doing things you used
to enjoy
• finding it hard to focus, remember things or
make decisions
If you believe
someone is in
danger because
of their thoughts
of suicide, call a
distress line or
9-1-1 right away.
• changes in your work style or zest for work
• constant thoughts of death.
If you have any of these symptoms for more than two weeks, contact
your doctor. Treatment can involve speaking to a trained mental health
professional, taking medication or both.
The difference between sadness and depression:
The blues or sadness
Clinical depression
You feel sad or unhappy. (We
all feel this way sometimes).
Clinical depression is a medical
illness.
You know why you feel sad or
blue (because of a sad event).
You do not know why you feel
the way you do.
You find that the feeling of
sadness goes away on its own.
Clinical depression does not
go away without treatment.
You notice that your sad mood
is temporary — it lasts a few
days or weeks.
Clinical depression can last
months or years.
Emotional issues are part
of your journey
You may naturally want to hide
your feelings. You may not want
to share feelings of sadness or
62
I keep a journal of one positive
thing that happens everyday,
so when I am down it shows
me that there are good parts
in my life. – John
depression. But keeping emotions inside can interfere with your recovery.
Sharing your feelings, as hard as it may be, is a step toward meeting your
recovery goals.
Find people you can talk to about your feelings. This might be family, friends,
other stroke survivors, someone from your faith community, or a member of
your healthcare team. Join or start a support group. If any of your feelings
become overwhelming, talk with a healthcare professional right away.
Talk about how you are feeling to a member of your healthcare team you are
comfortable with. A psychologist or social worker might also help.
Speak with people in your life that you are close to and trust.
Look for support groups or peer visiting programs. Talking to others who
live with stroke can help.
Low energy (fatigue)
One of the invisible effects of stroke is fatigue, both in body and mind. It is
tiredness that does not go away with a good night’s sleep. It can leave you
feeling like you have no energy. You may get tired after just a short period of
activity, even just getting up to eat breakfast.
Feeling tired for a few weeks is normal. Post-stroke fatigue is a sense of intense
tiredness that does not get better with rest. It can lead to depression and
isolation. It is important to
tell your team you are having
post-stroke fatigue.
As a mom, wife and child of elderly
Recovering from a stroke
takes a lot of energy and
thought. Here are some tips
for managing and maximizing
your energy.
parents I wanted to still be able to
do everything I did before. Without
pacing myself I would become too
exhausted by mid-day. And end up
missing important activities. Plan
ahead!! – Patrice
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Structure your day
• Keep a schedule of daily activities.
• Know your high and low energy times.
• Plan your activities a day in advance. Anticipate the energy needs for
each one.
• Schedule rest periods. Plan higher-energy activities in the morning or
after a rest.
• Balance your activity level to make sure you have the energy you need
to get through the day.
• If the day’s tasks will take more energy than you have, pick your priorities.
Be sure to include things you enjoy.
• Talk about your energy level and need for rest with your family and
friends. Ask for help with high-energy tasks.
Arrange your space
• As much as you can, arrange your home so that it is easy to move
around in.
• Reduce the need to climb stairs.
• Put frequently-used items where they are easy to reach.
• Sit rather than stand when doing chores such as ironing or washing dishes.
• Use energy-saving equipment and technology. For example, try
shopping online.
Eating, sleeping and staying
active
• Eat a healthy diet to maximize your
energy levels.
• Establish good sleep patterns. Go
to bed and get up at the same time
every day.
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• Include down time, rest periods or naps in your day.
• Avoid sedating drugs and excessive alcohol.
• Take part in exercise and leisure activity you can tolerate. Talk to your
healthcare team about what is safe for you.
• Set goals to gradually increase the intensity and duration of exercise.
An occupational therapist can work with you on a plan for reducing the
energy needed for your daily tasks.
A physiotherapist can help you plan exercises and safely increase the amount
of exercise you do.
Your family and friends can help you get things done.
Cognitive problems (thinking)
Understanding problems you have with thinking or cognition can help you
develop strategies to manage daily life. Talk about your problems with your
healthcare team. They will help you make a plan you can share with your
family and friends.
Areas of cognition that can be
affected by stroke
Tips and strategies
Attention: Being able to concentrate
on one thing for the time needed.
• Find a quiet space when you are
trying to do something.
Examples: You become easily
distracted when performing a task
– like getting dressed or eating take
longer.
• Turn off all distractions, such as
radio or TV.
• Keep clutter to a minimum.
• Take your time and do a task one
step at a time.
65
affected by stroke
Tips and strategies
Orientation: Being aware of time,
place and who you are.
• Keep a calendar and cross off the
days as they go by.
Examples: You may think it is time
for lunch soon after breakfast.
• List the times for your daily
activities and check them off once
you finish.
• Try to establish a routine, doing the
same thing at the same time of day.
Memory: Being able to remember
personal experience, information
and skills.
Examples: Stroke can affect your
ability to learn new things or
remember old information to
help you with everyday tasks. You
may forget the names of ordinary
things. Or you might forget the
exercise instructions you get from
your physiotherapist.
Sequencing: Being able to arrange
things or perform actions in the right
order.
Examples: It may be hard to get a
task started or remember what the
next step is. This can cause trouble
with things like getting dressed —
for instance, forgetting to put socks
on before shoes.
66
• Writing down important information
in a journal can be helpful.
• Put signs and labels on things you
keep forgetting or want to remember.
• Store items in the same place every
time you use them.
• Try memorizing the words to songs
or poems you like.
• Use on-line memory games.
• Read anything that interests you.
• Break down a task into very short,
numbered steps.
• Follow the steps every time you
need to do the task.
• Write the steps down and keep
them where you can see them.
affected by stroke
Problem solving: Figuring out how
to solve a problem takes many parts
of cognition.
Example: You may not realize that you
are having trouble putting toothpaste
on your brush because you have
forgotten to take the cap off. Solving
this problem requires memory skills,
sequencing skills and insight.
Insight and judgment: Knowing what
we can do and understanding our
limits; making good choices based
on our understanding.
Example: You may not understand
that you have poor balance and
should ask for help when getting up.
You may try to get up on your own
and risk falling.
Tips and strategies
• Break the problem into small parts.
• Brainstorm possible solutions.
• Get family and friends to help if
needed.
• Practice solving problems with word
and number puzzles.
Post reminders such as:
• Don’t stand up without help.
• Put on your coat when you go
outside.
Occupational therapists can help you adapt tasks to your abilities.
Talk to your healthcare team and your family and friends about your thinking
skills. Let them know if you think you are having more difficulties.
67
Changes in perception
Perception is the way your brain tells your body about what is going on
in the space around you. Here are some areas of perception that may be
affected by stroke and some tips for dealing with them:
Areas of perception
Tips and strategies
Vision: may be affected several
ways.
Examples:
• double vision
• partial loss of vision in one or
both eyes
• blurred vision
• Lighthouse strategy: This means that you
turn your head from side to side using
the visual field you still have, in a
sweeping motion to look at the whole
room. This makes up for the loss of
visual field.
• Put signs on the doors, such as
“bathroom” to help you find your way.
• loss of visual field (blind spots).
• Use tools such as prism glasses and
patches as recommended by your
healthcare team.
Sensation: feeling may be lost on
the side of your body affected by
stroke. This can put you at risk
for injury.
• Use a silicone glove when handling hot
pans.
Example: you may not be aware
of a shoe rubbing or hot liquid in
a cup.
• Check the skin on the affected side for
red marks.
Spatial relations: estimating
or judging the space between
things around you.
• Understand and identify safety issues in
your environment.
• Adjust the water heater to a safe
temperature.
Examples: you might:
• Tape the edges of tables and stairs to
provide a point of reference.
• misjudge the height of steps or
bathtubs.
• Always make sure you can feel the seat
of the chair you are about to sit on.
• trip over rugs, steps or uneven
pavement.
• miss the chair when sitting down.
68
Areas of perception
Tips and strategies
Time awareness: recognition of
time passing.
• Keep clocks and calendars handy.
Example: you may feel that time
is passing more slowly or quickly
than it really is. For instance, you
may think it is time for lunch soon
after breakfast.
Unilateral body neglect: a
decreased awareness or failure to
attend to one side of the body.
Example: you may be unaware or
less aware of the side of your body
affected by stroke, so you do not
take care of it. You might put only
one arm into a shirt.
• Learning to scan the neglected side
with your eyes (visual scanning). Or
use a mirror to remind yourself of the
affected side.
• Include your affected side in any task.
• Rub the affected arm and leg. Post
reminders such as, “Rub your left arm.”
Visual neglect: seeing only part of
what is in front of you.
• Have people approach you from your
neglected side to increase awareness.
Example: you may only recognize
or perceive part of the table or
plate.
• Place articles you use frequently such
as phone or remote on your neglected
side.
Pain: shoulder pain is common
after a stroke. This happens when
poor muscle tone moves the joint
out of place (shoulder subluxation).
• Always lie, sit and walk in
recommended positions.
Damage from a stroke can also
cause burning or stabbing pain in
an arm or leg. It can be made worse
by touch or cold temperature.
• Monitor and track your daily pain levels.
• Change positions often. Avoid long
periods of time in one position.
• Follow your plan for pain control.
• Sometimes physio, massage or pain
medication can help.
69
Talk about your perception problems with your healthcare team and find out
who can provide the best support for each problem. Make sure your care
partner, family and friends understand where you are having challenges,
so they can support you.
70
6
Relationships
Dawn and Shani
YOUR STROKE JOURNEY | 6. Relationships
71
6.
Relationships
Stroke recovery can take a toll on everyone. Care partners have a critical role
to play in their partners’ recovery. But new roles and providing daily support
can be tiring.
Pages 4 to 6 of this guide outlines the need for care partners and family
members to watch themselves and one another for signs of burnout. Make
sure that you are familiar with the message for care partners and that you
are aware of the signs of burn out.
Connecting with family and friends
Connecting socially is not just enjoyable — it is essential for your health
and recovery.
Having a stroke may change the way you
connect with people. Changes in the way
you look and feel may have affected your
confidence. These feelings sometimes stop
you from doing things that once mattered
to you. You may avoid social activities,
family and friends.
Not all your friends will
understand what you are
going through and some
will drift away. In fact
quite a few of our current
friends never knew us
pre-stroke. – Frank,
Lou’s care partner
If you are finding it hard to connect, talk
to your family, friends and healthcare team
about what you are feeling and how you can get help.
For some friends and family, the changes caused by the stroke may make
them uncomfortable, so they do not connect with you as often as before.
Some may think that it is better not to intrude on your recovery. Some might
not know how to connect with you anymore.
Think about asking them why they are not connecting. It might help them if
they understand your experience better, your need for connection and the
best way to do that.
72
Parenting after a stroke when you still have younger
children
A stroke creates physical and emotional demands on both parents and
children. It affects each member of the family differently.
The parent who has had the stroke needs to focus on recovery and may be
less able to be the parent they were. Others in the home often take on extra
roles and responsibilities.
Some children may develop behaviour problems or show signs of depression
after a parent has a stroke. Here are some tips to keep connected to your children:
Communicate. Make sure to give children a chance
to express their feelings and concerns. Be open,
sensitive and honest.
Be yourself. Do not let the stroke be the focus of your
relationship with your child.
Make time. Plan time in each day for your child.
Be supportive. Try not to let the situation overwhelm
you and the children. Plan to cope as a family with
each problem as it occurs.
Use your children’s talents. Empower them by
hearing what they have to say and by using their
ideas to solve problems.
Maintain routines. Include having fun as part of
the routine. It helps to cope with uncertainty.
Make children part of the team. Involve them in
parts of your therapy. Teach them how to handle
emergencies. Make sure they know how to respond
if another stroke occurs.
My son
Mathew helped
with my physio,
it helped him
understand
what I am going
through. – John
Talking to children
Children often blame themselves when something bad happens in a family.
They need to know that no one caused the stroke and no one is to blame.
73
Explain that a medical problem caused the stroke. Make sure they understand
and accept that it did not happen because of anything they said or did.
Here are some tips for talking to children about stroke:
• Explain what a stroke is by using words your child can understand.
You could say: “A blood vessel taking blood to my brain was not
healthy. It started to bleed. That meant my brain did not get enough
blood for a while.”
• Talk about the stroke: what caused it, how it feels — the good and the bad.
• Explain the results of having a stroke. Explain the changes you are
experiencing and that you may not be able to do the same things as
before, or you may do them differently.
• Talk about the effects that cannot be seen such as fatigue and
memory problems.
• Explain that you may need a lot of rest to get better and it may take
a long time.
Talk with your doctor, nurse, social worker or someone from your faith
community.
Family and child services in the community may offer counselling and play
therapy for children.
Sex and intimacy
Being intimate with someone you care about can be an important part of a
relationship. The effects of stroke can affect intimacy with your partner. Here
are some possible problems:
• The stroke may have damaged the part of your brain that controls your
sex drive.
• You may feel emotionally overwhelmed and find it hard to focus
on intimacy.
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• Fatigue and depression may
affect your desire and sex
drive.
• You may fear that you will have
another stroke during sex.
• You may have lost feeling on
one side of your body.
• You may have trouble
communicating with your
partner.
• Men may have trouble getting an erection or ejaculating.
• Women may have less feeling in the vagina and more dryness.
Tips to help with intimacy
Timing
There is no defined time for resuming sexual relationships. It is up to you to
know when you are ready.
You may want to start slowly with other ways to show intimacy and gradually
work up to sexual intercourse.
Set the scene
Talk with your partner about the best
times for getting together. Choose
times when you are both rested and
will have no interruptions. Set aside
plenty of time. That way, if your sexual
responses are slow, you are less likely
to feel frustrated.
It is so important for
both of you to reestablish
the intimate side of your
relationship. Seek support
from healthcare providers
who are open and willing
to find answers. – Millie
Relax together before you begin.
Have a massage, listen to music or
soak in a bath.
75
Before sex:
• Do not drink large amounts of liquid for two hours before sex.
• Empty your bladder.
• Avoid alcohol.
Try new things
If your stroke has caused loss of movement or feeling, experiment with new
ways of having sex that make it as easy and comfortable as possible.
Use a lubricating jelly that is water-based to help with vaginal dryness. Avoid
lubricants such as oils or petroleum jelly because they do not dissolve in
water and can lead to infection in your vagina.
You and your partner may enjoy sharing sexy books or movies. Talk with
your partner to see if this would be helpful.
There are many ways to show love and affection. Hugs, kisses, touch and
massage are just a few. Take time to talk to your partner to discover different
ways to please each other.
During intimacy, focus on the feelings on the side of your body not affected
by your stroke.
Medication and your sex drive
After a stroke, your doctor may prescribe pills to lower blood pressure or
antidepressants. These medications can affect your urge or ability to have
sex. Never stop taking a medication without consulting your doctor first.
Talk to your doctor about how the medication is affecting you.
You may hear about herbal remedies that claim to boost your sex drive or
sexual function. Natural and herbal products can interact with medication
you are taking. Talk to your doctor or pharmacist first.
Your family doctor, social worker, nurse or counsellor may be able to help
if you have questions about intimacy or need to talk about it. They may
recommend a therapist who specializes in sexual issues.
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7
Tasks:
EVERYDAY
YOUR NEW NORMAL
Luis
YOUR STROKE JOURNEY | 7. Everyday Tasks: Your New Normal
77
Tasks:
7. EVERYDAY
YOUR NEW NORMAL
After a stroke, it can take time to figure out how to do the tasks that make
up daily life — tasks such as washing, dressing, preparing and eating meals.
The healthcare team will use different
approaches to help you meet your
personal recovery goals in doing everyday
tasks. Some of the therapies include:
Constraint induced therapy: This involves
confining your stronger arm, to make you
practice using your weaker arm.
Embrace change, things
are different, there are
new rules. You have to
learn how to play with
new rules. – Luis
Task-oriented training: This involves
practising an everyday task with the goal of getting a skill back or gaining a
new skill to replace it. The therapist might also ask you to imagine doing the
task before trying it.
Strength training: These are exercises that increase muscle strength.
Compensatory therapy: This approach works by changing the environment,
finding another way to do a task or using an assistive device such as a
bath seat.
Assistive devices can help
There are many devices to support you in your everyday tasks. For example,
there are devices to help with grooming and devices that can help with
cooking. A member of your healthcare team, such as an occupational
therapist, physiotherapist or nurse, can guide you in choosing devices.
They will help to select devices that fit you and are useful and safe.
Try it out before you buy it. Make sure you get instructions that you can
easily follow.
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You may be able to get devices at the hospital or
rehabilitation center where you receive treatment. If
not, ask for a list of companies that supply these devices
in your area. You may also find local companies by
searching on the internet.
General tips for any task
Find
the tools and
knowledge to
help you keep
progressing
forward. – Carol
Arrange your living space to make it safe
and convenient:
• Ensure there is good lighting and a clear path.
• Get rid of distractions like the radio or TV.
• Remove all area rugs and loose mats — these are tripping hazards. Add
non-slip pads under larger carpets. Use two sided tape to make sure all
corners and edges are stuck to the floor.
• Arrange furniture so that you have clear paths for walking and moving.
• If there are stairs, install railings on both sides. Consider installing an
electric chair lift.
Plan in advance to make sure that the task is manageable:
• Make sure you have the energy needed for the task.
• Break the task into steps.
• Make a list of everything you will need for the task.
• Write the steps down and keep them close by when doing the task.
• Start with steps you know you can do and get help with the rest.
Slowly work up to doing the whole task when you feel confident.
• Stay seated for a task if you have balance problems or are feeling tired.
If you are alone, make sure you have a way to communicate if a problem arises.
This might be a portable telephone, a cell phone or a safety call button service.
Talk to your healthcare team for more tips, strategies and assitive devices for
your tasks.
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Bathing, grooming and dressing
Daily tasks like showering, shaving and brushing your teeth make you feel
good. Here are some assistive devices that can help you perform these tasks
safely on your own.
Bathing or showering
• special bath or shower chair or bench
• hand-held shower head
• tap handle extenders
• grab bars
• non-slip surfaces, such as rubber mats
or appliqués to roughen a smooth surface
• soap on a rope or liquid soap in a pump
bottle
Shower chair with safety bars
• long-handled brush
• face cloth made into a mitt
• terry cloth robe instead of a towel
Dental care
Long-handled brush
• built up toothbrush handle that is easier to hold
• electric toothbrush
• flip cap toothpaste instead of a screw top
or a pump top
• floss picks instead of dental floss
• brush on a suction cup for dentures
Shaving
Denture brush on
suction cups
• electric shaver
• magnifying mirror
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Nail care
• nail brush on suction cup
• one-handed nail clippers
Dressing
• clothing with elastic waists and zippers
or Velcro™ closings instead of buttons
Nail clippers on suction cups
• button hook
• front-closing bras
• clip or key ring to help pull up zippers
• suspenders instead of belts
Button hook
• clip-on ties and earrings
• sock aid for pulling on socks
• long-handled shoe horn
Long-handled shoe horn
Look for organizations and businesses in
your community that provide
services in your home, such as:
• hairdressers and barbers
• nail services and foot care
• support in bathing.
Your occupational therapist can help you:
• decide which devices you need
• get the devices you need
• learn how to use them properly and safely
• organize your bathroom to make it safe and accessible.
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Preparing meals, eating and drinking
Both physical and cognitive changes after stroke can pose problems in
planning and preparing meals. For example, problems with a hand or arm
can make it difficult to bring food and drink to your mouth. Cognitive changes
may mean that you need to relearn how to do some kitchen routines safely.
An occupational therapist can help you find devices and strategies to
manage meal times more independently.
Preparing meals
Planning
• Plan your meals a week ahead.
• Make a shopping list.
• Write down the steps needed
to get a meal ready.
• Try to make double batches and
freeze extras for another day.
You need to find equipment
that works for you in the
kitchen. Look in regular
stores, not just those that
sell adaptive equipment. –
Millie
• Set up a routine for preparing
meals. Practice the routine
often to help you remember the steps.
• Ask family and friends to get involved in meal preparation.
Safety in the kitchen
The kitchen can be an unsafe place. Safety awareness is important for
someone with stroke.
• Always wear protective, heat-proof gloves when handling pots and
pans. This is especially important if you have lost feeling in your hands
or if you might forget that something is hot.
• Arrange your kitchen to make it easier for you to reach things. Move
frequently used ingredients to lower shelves. Keep dishes and pots
within easy reach.
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• Put rubber mats or wet cloths
under plates and cutting boards to
prevent them from slipping during
food preparation and meals.
• When possible, use a microwave
oven or toaster oven instead of the
stove or oven.
Conserving your energy
• Sit in a chair when working at the kitchen counter.
• Change the knobs on doors to handles that are easier to grasp.
• Use cooking utensils and cutlery that are specifically designed for
people with stroke.
A cutting board with a
peg that can hold what
you are cutting
A rocker knife or pizza
cutter can be easier to use
than a regular knife
A one-handed electric
opener can help you open
cans more easily
Eating and drinking
Assistive devices can help you if you have trouble
coordinating your muscles while you eat and drink.
These devices include:
• plates with big rims to hold food in
• dishes with gripper pads on the bottom
so they don’t slip
• modified utensils with built-up
or bent handles
Plate with gripper pad
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• one-handed cutting utensils
• cups with a cut-out or partial lid.
Dental health
Dentures, partial plates and other dental devices
sometimes lose their fit after a stroke. Visit your
dentist or denturist to have the devices assessed
and altered as needed.
Utensils with built-up handles
Good oral hygiene is especially important if you
have swallowing problems (dysphagia). Clean your teeth after each meal.
Occupational therapists: can help you find devices to make cooking and
eating easier. They can also help you organize your kitchen to help you cook
and eat safely.
Dietitians can help you find healthy food choices that fit your situation.
If you cannot prepare meals on your own, here are some alternatives:
• community meal services such as Meals on Wheels
• grocery stores and private companies that sell complete,
balanced, prepared, healthy meals
• grocery stores that deliver
telephone or on-line orders
• healthy frozen meals. Read the
labels to check for nutritional
content. Make sure there are
vegetables and protein. Some
frozen packaged meals are high
in sodium and fat and are less
nutritious.
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A program in our
community has frozen
complete meals you
can purchase at a very
reasonable price. – Keitha
Driving
Many people see driving as an important part of regaining independence.
Your ability to drive after a stroke depends on your vision, judgment,
attention and physical abilities. About half of people with stroke can drive
again. The loss of driving privileges can be very hard to accept as it means
a loss of independence.
After a stroke, you are not allowed to drive until you have been
assessed and cleared to operate a car by your healthcare team
and provincial transportation department.
Before you get behind the wheel again
Driving is a complex activity. Driving safely uses all of your abilities — physical,
cognitive and perceptual, as well as communication abilities. Stroke can
affect these areas.
People are not allowed to drive after a stroke until they are assessed as
capable. In many provinces and territories, doctors must notify the Ministry
of Transportation when someone has a stroke. That means your licence will
be suspended. Check the status of your licence and find out what is required
to reinstate it.
Get assessed by an occupational therapist to see if you are ready to start
driving again. If you have a physical problem, such as a weak arm or leg, you
may still be able to drive. You may need to learn new skills and adapt your
vehicle to drive safely.
Depending on your initial driving assessment, you may need to complete
a written test and a road test before you can drive again. The provincial
driving evaluator will work with you to figure out if you are ready to drive.
If you have problems communicating (aphasia), he or she may use aids,
such as picture cards, to support communication needed for the written
and road test.
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Be patient if driving is a goal. Give
yourself time to recover from your
stroke and prepare to drive again.
Rushing into driving could put you and
others at risk. And if you do not follow
the assessment process, it could result
in permanent loss of your license.
It took me a year and a
half to get my licence back –
but it was worth it. – Joe
Accessible parking
Ask your healthcare team if you
need to have an accessible parking
pass. Find out how to apply in your
province/territory.
Your occupational therapist is the key
team member to support your return
to driving.
The transportation ministry in your province can help you figure out the
process for getting your licence back.
Find out your transportation options. Some examples are accessible transit,
taxis, volunteers, driving services, friends and family.
Household chores
Living at home is important to your quality of life. But mobility challenges
and fatigue can make household chores difficult.
Get started with a plan
• Make a list of chores that need doing, when they need to be done and
how often.
• Set priorities. Which chores are the most important?
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• Identify the chores you are able to do
yourself and where you need some help.
• Talk to your healthcare team about what
support is available in your community.
Do an internet search of agencies in your
area that can help.
• Share your list with your family and
friends who have offered to help. Accept
their help.
Shopping tips
• Write a list of the items you need to buy before you go to the store.
Take the list and a pen with you. Cross off the items as you find them.
• If getting out is not possible, shop online or call in a telephone order to
your grocery store.
• Try to do small shops more often. Getting too many items at once can be
tiring. It means pushing a heavy shopping cart and carrying a lot of bags.
• Allow yourself plenty of time to do the shopping — do not rush.
• Ask a family member or friend if they can go to the grocery store with you.
• Ask for help if you cannot reach an item.
• Use credit or debit cards to pay, so that you don’t have to count
out cash.
Doing laundry
• Make sure you can get to the laundry
area easily.
• Keep small, light laundry hampers in the
bathroom and bedroom. Line them with
shopping bags. This will make it a little
easier to get the clothes out of the hamper
and to the washer.
• Have a chair next to the washer so you can
sit when loading.
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• Clearly mark the settings on the washer and dryer. You can use
coloured stickers or labels.
• Push buttons or large dials on laundry machines are easier to use than
small knobs. You can add a tap turner to get better leverage with
small knobs.
• Make sure detergents and laundry supplies are within easy reach —
at waist level.
• Clearly label your laundry detergents
and supplies. Keep them sealed
securely.
• Pour liquid laundry detergent into
smaller, easy-to-use containers, such
as pump-action or squeeze bottles.
• Fold washing while sitting. Use a
table or low counter to avoid having
to bend over.
• An iron that shuts off automatically helps prevent burns to clothing
and skin.
• Avoid clothing that requires special care.
Keeping the house clean
• Look for cleaning products that are
simple to use, such as disposable wipes
and multi-purpose cleaners.
• Use light cleaning tools and small
containers. Avoid lifting large, heavy
objects like buckets of water.
• Use long-handled brushes, mops and
dusters to clean hard-to-reach areas.
• Put cleaning liquids in easy-to-use
containers such as pump-action, spray
or squeeze bottles.
• Keep cleaning materials within easy reach.
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• Sit whenever you can while cleaning.
• Clean only one small area at a time. Take frequent breaks.
Yard work and gardening
• Use hand tools with cushioned, thick or built-up handles that are easy
to hold.
• Use long-handled tools to get to spots that are difficult to reach.
• Protect your hands with gardening gloves. Wear an apron with pockets,
where you can store small gardening tools.
• Keep a phone with you in case you need
help while you are outside.
• Be aware of tripping hazards such as steps,
objects lying on the ground or uneven
ground. Keep equipment such as garden
hoses organized and out of the way so that
you do not trip over them.
• Raised garden beds, vertical gardens and
high pots are easier to reach than garden
beds at ground level.
• When working on the ground, use a sturdy
garden seat with kneeler cushioning. You
can lean on the seat when you stand up.
• Keep a drink of water in a plastic bottle
nearby.
• Sit down when you can. For instance, you could sit at a table or bench
to pot or prune plants.
• Keep tools that you use often within easy reach.
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Your occupational therapist can help you to adapt tasks to your abilities.
Support services in the community can help with household chores. Some
charge fees. Others rely on volunteers or are part of a government-funded
home care program. These services are usually aware of each other and can
refer you to a service if they don’t provide it themselves.
Call on your family members and friends who have offered help.
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8
GETTING THE
LEISURE TIME
Most FROM
Millie
YOUR STROKE JOURNEY | 8. Getting the Most from Leisure Time
91
8. GETTING THE
LEISURE TIME
Most FROM
Leisure activities refresh the body, mind and spirit.
They do much more for our health than we realize.
This is especially true after a stroke. Doing things
you enjoy and connecting with friends can reduce
depression and relieve stress. Leisure activity
provides structure in your day. It increases
independence and improves self-confidence. Our
physical and mental abilities improve while we are
doing things we enjoy.
Ken
Find things to do that you enjoy. An occupational
or recreational therapist can help you adapt an activity you love to your
current abilities or help you find a new one.
Adapting your activities
Here are ways to adapt some popular activities.
Reading
Tools that can help you read include book holders,
large-print books and talking books. Electronic readers
allow you to control the print size and operate it
with one hand.
Games
Card holder stands let you play cards with
one hand. Large-faced cards and card
shufflers can make a card game easier.
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You may find it easier to use computer card games and other game apps.
There are many programs and devices that can provide hours of entertainment.
Game controllers that can be used with one hand are available.
Jigsaw puzzles
There are large-piece jigsaw puzzles that are age-appropriate. Special mats
can ensure that the pieces do not fall off or get lost.
They also make pieces easier to pick up.
Knitting, sewing and needlework
Special devices help you knit with one hand. Frames
and clamps can hold your needlework so you can sew
with one hand. Other tools include needle threaders
and finger grippers so the needle is less likely to slip.
Woodworking
Safety is a very important concern in your workshop. Make sure all power tools
have automatic shut-offs and safety catches. Have a family member or
friend help you if you need to use an electric saw, drill press or router. Use
clamps to hold projects in place so you can drill, carve, sand and paint with
one hand.
Sports
Physical activity helps you stay healthy and avoid
another stroke. Sports such as tennis, golf and
swimming are a great way to stay active. Your
physiotherapist,
occupational therapist
and recreational
I tee off by
therapist can help you
driving with one arm,
get ready for sports.
pick up the ball and
You may need to
putt out on the green.
– Lou
YOUR STROKE JOURNEY | 8. Getting the Most from Leisure Time
93
start slowly and build the strength and energy
you need.
You can adapt the handles of sports equipment
to make them easier and more secure to hold.
Recreational and occupational therapists can
help you select and adapt activities you enjoy.
There are numerous outdoor and recreational
clubs and groups in your community that
accommodate physical and mobility issues.
Marco
Maybe you are interested in sailing, hiking,
kayaking, horse riding or travel. Look in seniors and recreational guides
or on the internet.
Get tips and inspiration from the Active Living Coalition for Older Adults at
alcoa.ca.
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9
Returning TO WORK
Ken
YOUR STROKE JOURNEY | 9. Returning to Work
95
9.
Returning TO WORK
There may come a time in your recovery when you consider returning to
work. You may be asking yourself if you are able to do the job you used to
do. Or you may be considering changing jobs or volunteering.
An occupational therapist and vocational counsellor can help you decide if
you are ready to get back to work and help you plan for it.
Looking at your abilities
Here are five key areas to consider when looking at your ability to do a job:
Physical ability
• use of arms
• use of legs
•eye-sight
•fatigue.
Communication ability
•listening
•writing
•reading.
Cognitive ability
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•speech
•memory
•attention
• problem solving
• thinking speed
•fatigue
• planning and organizing.
Emotional ability • level of frustration
• level of stress
• ability to manage
•confidence.
Ability to get around
• driving ability
• access to transportation.
Rate your abilities
Use this chart to estimate your strengths and challenges related to the
abilities listed above.
My Current Abilities:
0 1 2 3 4 56 7 8910
Limited Abilities
Some AbilitiesGood Abilities
Use this chart to see if your abilities match the demands of the role you are
considering.
Expected Job Demands:
0 1 2 3 4 56 7 8910
Not important to
doing your job
Somewhat important
to doing your job
Very important to
doing your job
Planning your return to work
Once you, your healthcare team and your employer agree that it is time to
return to work, figure out what your return will look like.
• How many hours a week are you able to work with your current
abilities and energy?
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• Can you return gradually,
building up hours as you are able?
• Can you work part time?
• Can you work flex hours?
• What adaptations need to
happen in your workspace?
Changing careers
When I went back to work
I put in half days. I tried to
work every day but that
was exhausting, so I
worked until 2 or 3 –
remember the energy
needed for the commute
home. – Keitha
There are national and provincial/
territorial programs to support people returning to a different kind of work.
For example, the Canada Pension Plan Disability Vocational Rehabilitation
Program offers vocational counselling, financial support for training, and job
search services to recipients of Canada Pension Plan (CPP) Disability Benefits.
Occupational therapists, vocational counsellors, social workers or
psychologists can help you determine if you are ready to go back to work.
They can also help adapt your workplace to your abilities. They will likely be
aware of local vocational and employment programs that provide retraining
and support.
Your doctor will be able to help with some of the documentation required.
The human resources department at your
workplace can help with workplace adaptations.
There are many local resources that help
with return to work. They are listed under
Employment or Vocational Counselling in
community resource directories or on
the internet.
Mark
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Volunteering
Volunteer opportunities can benefit your
recovery by:
• helping you maintain and improve
your skills
• offering the chance to try out a new
role or gain experience
• building confidence
You lose sense
of purpose. The
world is moving
fast and leaves
you behind.
Volunteering has
given me purpose
and carried me
past my stage
of depression. –
Ramon
• energizing and relaxing you
• providing networking opportunities.
Here are some questions to ask yourself
when choosing a volunteer
opportunity:
• What are my strengths and abilities?
• What skills would I bring to this
volunteer role?
• Would I like to work with people
or would I rather work alone?
• Am I better behind the scenes
or do I want to be out in front
of people?
• How much time am I willing
to commit?
• How much responsibility am I ready
to take on?
• What causes are important to me?
Wayne
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Once you know what kind of experience you want, you can search the
internet for opportunities in your community. Ask friends and neighbours
for ideas. Some communities have volunteer bureaus or list opportunities
in local newspapers.
Protecting your benefits
Make sure your volunteer efforts will not affect your eligibility for
disability payments. Check your insurance policy to make sure.
Information in this chapter has been adapted from the Southwestern Ontario Stroke Network’s
website on the “return to work” journey. For more information, go to swostroke.ca
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10
Business:
TAKING CARE OF
ADVANCE PLANNING
YOUR STROKE JOURNEY | 10. Taking Care of Business: Advance Planning
101
Business:
10. TAKING CARE OF
ADVANCE PLANNING
A stroke can affect your ability to earn a living. It can also bring on new
expenses. Figuring out what support is available might take some time.
That’s why it is a good idea to get started on taking care of your finances
sooner rather than later. While you are recovering from your stroke, family
and friends, as well as workplace contacts, can look into what benefits you
qualify for.
It may also be a good time to think about the choices you would make if you
became very seriously ill. Advance planning is a way of helping your loved
ones by making your choices formally known.
Your sources of income
Paid employment leave
If you were employed at the time of your
stroke, contact your human resources
department to find out what benefits are
available to you. These may include:
• sick leave
Get help understanding
your disability policy – the
do’s and don’ts. – John
•vacation
• short-term disability
• long-term disability.
Ask these questions:
• What do I need to do to apply?
• What are the eligibility criteria?
• How long will the benefit last?
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• What is the amount of my benefit?
• Is the benefit taxable or non-taxable?
• What deductions will be taken off?
Provincial/territorial disability programs
Each province/territory has its own way to support people with a disability.
This might involve income benefits, tax credits or deductions, job retraining,
or programs that help adapt homes and purchase equipment to increase
independence.
To find out about programs in your province:
Go to canadabenefits.gc.ca
Click “I am a person with a disability”
Select your province/territory
Canada Pension Plan Disability Benefit
If you have paid into the Canada Pension Plan, you may qualify for a disability
pension. Look into this benefit as soon as it becomes apparent that you
might not be able to return to work.
Employment Insurance (EI) sickness benefits
These benefits are for people who are unable to work because of sickness.
They are available once your employer benefits are exhausted. For example,
if you have used all of the sick leave and vacation available to you, you may
qualify for EI sickness benefits for a limited time.
Apply as soon as you decide that you will not be able to work in the short
term. EI will ask for the following information:
• your employment record for the last 52 weeks
• amount of EI payments
• proof of inability to work from your doctor.
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To find out about programs in your province:
Go to servicecanada.gc.ca
Click “Employment Insurance”
or
Call Service Canada at 1-800-622-6232
Personal insurance
Some people have disability insurance through a private plan or through
their mortgage insurance or credit card insurance. Check your records
carefully to see whether you have any insurance coverage that you
can claim.
Savings on your taxes
The following tax credits and deductions are available nationally. In addition,
check to see if your province also has opportunities to save on taxes.
Disability tax credit
This non-refundable tax credit reduces your taxes. You will need a
proof-of-disability certificate completed by a qualified professional such as
a doctor. This must be approved by Canada Revenue Agency (CRA) before
you can receive the credit. To learn more:
To learn more:
Go to cra-arc.gc.ca
or
Call 1-800-959-8281
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Medical expenses
You or your spouse can claim medical care expenses that are not covered by
health plans. There is a limit to the amount you can claim. Keep all medical
receipts and claim them at tax time.
Expenses related to medical care that may be tax deductible include:
• payments to medical practitioners, testing facilities and hospitals
• transportation expenses
• medical devices and equipment such as wheelchairs or orthotics
• premiums paid to a private health insurance plan
• expenses for adapting your home to your disability
• costs of rehabilitation therapy
• preventive, diagnostic and other treatments
•medications
• dental costs
• alternative or complementary treatments.
To learn more:
Go to cra-arc.gc.ca/medical/
or
Call 1-800-959-8281
Covering your medical expenses
Your healthcare team may recommend the purchase of equipment or
additional therapy sessions. There may be programs available to help with
these costs.
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Extended health benefits
You may have extended health benefits through your employer or your own
personal extended health care plan. Be sure to ask:
• What benefits are available and what are the funding criteria?
• What are the funding limits?
• Will it cover costs of equipment? If so what equipment and how much?
• Will it cover costs of therapy? What kind (for example, physiotherapy,
occupational therapy, massage therapy, speech therapy)?
Provincial/territorial programs
Some provinces/territories have programs that pay for assistive devices
such as walkers, wheelchairs and canes. Find out what is available in your
province/territory. To learn more:
• check your province or territory’s website
• ask members of your healthcare team.
The social worker on your team.
The human resource contact with your employer.
Your financial planner or accountant.
Community organizations with volunteer tax preparers.
Your bank.
Advance planning
Having a stroke raises difficult life issues. You may feel that it is time to
do some advance planning. Advance planning means setting out how you
would like your personal care and finances managed, should you be unable
to communicate your wishes in the future. It requires that you talk with
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family and friends, as well as your healthcare team, your financial advisor
and a legal professional.
Each province/territory uses different terms and has different legal
requirements for advance planning. There are many resources available
to help you and your family through this process.
There are three things that you can put in place in case you have another
stroke or a condition that is more disabling or life limiting:
1. Select a representative or substitute decision maker for health care
and financial decisions.
2.Create a plan for your health and personal care should you be unable
to communicate your wishes (a living will).
3.Make a will for the distribution of your estate if you die. This is called
estate planning.
1. Select a representative or substitute decision maker
This is a person you trust (or it could be more than one person) whom you
ask to act on your behalf, should you be unable to communicate or make
decisions about your health care and finances.
It is up to you to decide who you could ask to carry out this responsibility.
Choose someone who will honour and respect your wishes.
You can ask the same person to make all decisions, or you may ask different
people to carry out different decisions. For example, you might ask one
person to carry out your wishes about your healthcare and a different
person to handle your finances.
Once you decide who will represent you, it is important to communicate
your wishes clearly with that person and make sure you are understood.
Once you decide who will represent you, it is crucial to
share your wishes clearly until you feel you are understood.
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2. Create a living will for your personal care
Advance care planning is a process of reflection and communication. It is
a time for you to reflect on your values and wishes, and to let others know
your future health care preferences in the event that you are not able to
communicate them. This might start as a conversation, but you should put
your wishes in writing. Here are some helpful steps.
• Think about what is right for you. Ask yourself: what are my values and
beliefs? What do I know about end-of-life care? What is important to me?
• Learn more about the medical
procedures that might be offered
near the end of life. Some might
improve your quality of life. Others
might only prolong life. Different
people have different thoughts
about these procedures. Decide
what you think.
Planning is crucial, don’t
procrastinate. Have the
conversation with your
family it is important.
– Millie
• Talk about your wishes with your representative, family members and
friends who are important to you.
• Write down your wishes or make a recording or video. There are
also forms available in most provinces and territories. Each of your
substitute decision makers should have a copy. Share your written
wishes with your healthcare team, your family and close friends.
• Review your plan regularly to make sure it reflects your wishes,
especially if something in your life changes. Communicate any
changes to your representative.
3. Plan your estate
Estate planning means writing down how you would like to transfer your
property, money and other assets at the end of your life. This usually takes
the form of a legal document such as a will. You may need the help of a
lawyer to finalize it.
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Advancecareplanning.ca
Search for “advance care planning” on your provincial/territorial
government’s website
Consult a lawyer, bank professional and doctor for advice in the
various areas.
Checklist for your personal documents
Use this checklist to help you collect and organize important records,
documents and instructions that you and your representative may need:
• Legal will
• Advance care plan or living will
• Name and contact information for your substitute decision makers
• Birth certificate
• Social Insurance Number
• Life insurance policy
• Health insurance policy
• Bank account information and passwords
• Safe deposit box location
• Real estate or rental papers
• Car insurance and registration
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This publication is for informational purposes only and is not intended to be considered or relied upon
as medical advice or a substitute for medical advice, a medical diagnosis or treatment from a physician
or qualified healthcare professional. You are responsible for obtaining appropriate medical advice from a
physician or other qualified healthcare professional prior to acting upon any information available through
this publication.
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Was this guide helpful?
Please help us make sure that we are providing helpful information and strategies
to people living with stroke and their families. Take a few minutes to complete the
following survey and mail it to:
Heart and Stroke Foundation
OR
Attn: Health Information Team
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This publication Your Stroke Journey: A Guide for People Living With Stroke is for informational purposes only and is not intended to be considered or relied upon as medical advice or a substitute for
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Your Stroke Journey - Heart and Stroke Foundation of Canada

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